I am the mother of a three year old son who has a tectal glioma and secondary hydrocephalus. He has been given a ten to twenty year prognosis. His doctors have told me that this type of tumor is slow growing and generally does not start to really grow and cause problems until puberty. Once the hormones kick it they tend to jump start this type of tumor. His doctors have also told me that when this happens its not good. Is this really the norm for this type of tumor. Will my son grow to have a family of his own?
I'm so sorry to hear about the diagnosis of your son. I know nothing about tectal glioma, but did a quick look about management. I found this study on Pubmed (I can't post link on here - you might want to do a search on pubmed):
The role of neuroendoscopy in the management of tectal gliomas
Department of Neurosurgery, Walton Centre for Neurology and Neurosurgery, Lower lane, Fazakerley, Liverpool, L9 7LJ, UK.
OBJECTIVES. The objective was to determine the role of neuroendoscopy in the management of tectal plate gliomas. METHODS. Clinical and radiological data of children and adults who underwent neuroendoscopy were reviewed. Successful outcome was defined as shunt-freedom and resolution of symptoms and signs of raised intracranial pressure. RESULTS. Between 1 April 1998 and 31 March 2003, 11 patients (6 males and 5 females) underwent endoscopic third ventriculostomy (ETV) for the management of hydrocephalus secondary to a tectal plate glioma. This comprises 4% of 258 patients who have undergone neuroendoscopic procedures in our unit. The median age at the time of surgery was 19 (range 9-59) years. In 4 patients endoscopic biopsy of the tumour was performed at the same time. During a median follow-up period of 31 months (range 2-45), 4 patients underwent a second ETV, of whom 2 subsequently required insertion of ventriculoperitoneal (VP) shunts. Nine patients (82%) remain shunt-independent. Of the 4 tumours that were biopsied, a histological diagnosis of low-grade astrocytoma was made with certainty in only 2 cases. All tumours remained unchanged on follow-up MR imaging. CONCLUSIONS. Endoscopic third ventriculostomy can result in excellent control of hydrocephalus in patients with tectal plate gliomas. Tectal gliomas appear to be very slow growing tumours that can be managed conservatively in adults as well as children. Longer follow-up in larger studies is required.
It doesn't sound like the horrible prognosis your doc gave you. I'm sure you were devastated to get that news, but I'd be livid if it were my child & a doctor just wrote my child off like that, when it is apparent there are treatments. That study was done between 1998-2003. I'm sure there would be even more advancements in treatment. I would find the best doctor you can that handles brainstem tumors. Or look into St. Judes Research Hospital. They do an incredible amt. of research compared to other children's/cancer hospitals from what I've heard.
Thank you for you info I too have seen these sights but yet I have not found a single adoult to say they made it and are fine. All I have found are other parents of young children and at that not many since it is so rare. Thats why I'm so confused.
Look at this link. I had also a tectal glioma and my surgical removal was on April 1st, 2008. My tumor was also totally removed and my last MRI on last thursday show no increase.
I wish xou and your son all the best.
Look after another doctor.
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